When I began my journey with Spinraza (nusinersen) in November 2017, I had little more than an inkling about what to expect. At the time, I was more concerned with the procedure than the potential benefits. The idea of letting a radiologist stick a needle in my neck wasn’t exactly thrilling, especially since I knew this would be an ongoing series of injections.
Getting through that first dosing without any difficulties or side effects was a huge relief. From that point on, I could focus on the actual effects of the treatment.
As I’ve written about previously, I’ve experienced a surge in energy and overall strength since I started this process. My gains have included better head and neck control, less fatigue, better dexterity and range of motion, and improved management of my respiratory issues. The latter makes it easier for me to talk clearly, now that I’m not constantly running out of breath.
However, I’ve also learned why my maintenance doses are so important. The closer I get to each injection, the more I feel the effects of the previous doses wearing out. My energy levels start to revert, and I find myself on the verge of exhaustion at the end of the day.
Currently, I’m in this pesky pre-injection fatigue stage. I’m a few days away from my next dosing, and my body definitely knows it. Whereas I typically go all day with barely a lapse in energy, now I feel like napping as soon as the afternoon hits.
Back in 2017, I didn’t see the need for multiple injections. I figured that if Bruce Banner only required one supply of gamma radiation to transform into the Incredible Hulk, I could get by with one helping of this fancy muscle juice.
Now that I find myself dragging throughout the day without even leaving my house, I’ve changed my mind. Though it can be tedious to go in for an injection every four months, I’m grateful to do it. Spinraza has become an essential component of my healthcare, and it’s all the more evident in the days leading up to an injection.
Even now, my writing is slower than usual. I normally knock out columns and comic script pages after work, but it’s become more time-consuming lately. All of this makes me realize just how much of an impact this treatment has on me.
Just the other day, I went to my clinic to get lab work done for my injection. Given that I’ve barely left my house in the last two months, I was thrilled for this appointment. I had never been so excited to have blood drawn and to urinate in a cup. It meant that I could have some actual human interaction.
Yet, as my mom and I drove home that afternoon, I felt a sudden wave of fatigue wash over me. I barely finished work that day, and by 5 p.m., I was out for a nap.
Pre-injection fatigue is not abnormal. If anything, it gives me the motivation I need to go to the hospital every four months. By this time next week, I’ll feel more like Wolverine, and less like the drowsy prince from “Spaceballs.”
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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